This mother has participated in CFSAC meetings more than 20 times in an effort to get the Health and Human Services to take appropriate action to address this health crisis. Her two sons have suffered from severe Myalgic Encephalomyelitis for more than a decade. The photo was taken of her sons one month and one day before ME devastated their lives.
The Chronic Fatigue Syndrome Advisory Committee – CFSAC – met last week for its bi-annual meeting to discuss recommendations to make to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and chronic fatigue syndrome.
By my calculations, I have participated in more than 20 CFSAC meetings since 2007.
Back then I could never have imagined that as a mother of two sons, severely ill and housebound with ME, I would see so little progress in these 11 years from HHS agencies.
In October 2010 my son Matthew told this committee:
“The horrible thing is, I’m not sure how devastating this illness really is. I’ve been sick for so long… that I don’t know what normality feels like.
I used to swim 4 times a week, 5 miles each time. Now I can get my heart rate over 160 beats per minute by running in place for 30 seconds.
I used to be a straight A student. Now I can barely concentrate for 20 minutes in a day (no more than 3 times a week). After that, it gets exponentially more difficult and exhausting.
I used to have a typical, active life. Now my daily life is impossible to plan in advance, because there are days when getting out of bed seems beyond absurd.”
In October 2010, my son Alexander told this committee:
“I taught myself to read at the age of 4. At the age of six, I was reading computer-troubleshooting magazines. (And understanding them.)
Now, I read and reread things to try to ensure that I understand them.
I used to be able to remember where I had last seen a book, a game, a drink…
Now, if I set my water bottle down close to the sink to wash my hands, I often walk away, having totally forgotten that I wanted to take a drink back upstairs with me.
I used to empty and fill the dishwasher, change the sheets on my bed, put away my clothes, as some of my responsibilities.
Now, each of these activities triggers tachycardia (POTS episodes). …[The] pounding, rapid heartbeat exhausts me and leaves my brain even more fogged.
I used to attend school full-time, participate in theatre and swim competitively.
Now, I am housebound.
I want to be more active.
I want to be able to hang out with people.
I want to be able to go to school.
I want to be MYSELF again.”
And here we are.
Another CFSAC meeting.
And I am still nervous at each one because patients lives are at stake. Still.
More than thirteen years have gone by since Matthew came down with ME at the age of 12. He is now 25.
More than twelve years have gone by since Alexander came down with ME at the age of 14. He is now 27.
All these years after they got ME, my sons are still just as severely disabled by ME.
They require 24/7 care, are unable to reach their intellectual potential, unable to live independently and are just as severely disabled by ME as when they got sick because there hasn’t been enough biomedical research to develop diagnostic tests, run trials and develop treatments for patients.
It is because of the persistent and appallingly low level of funding for ME research that there are no appropriate diagnostic tests, trials and treatments which would enable my sons and all patients to have a better quality of life, improved functionality and a return to productivity.
In a letter to a patient, NIH talked about its commitment to accelerating biomedical research and funding for ME to find treatments and a cure.
It also talked about things like program announcements, and grant-writing workshops to help those submitting grants.
Sounds great huh?
Like they’re doing things for us, right?
Here’s the catch. The letter was written in 2010. The same year as my sons’ comments to this committee. Parts of the letter read very much like NIH’s language in their FY 2019 appropriations submission.
Nowhere in the letter from 2010 or the FY2019 language is there evidence that NIH is urgently addressing the needs of those affected by ME.
Nowhere is there evidence that NIH is aggressively maximizing all of the tools at their disposal.
Nowhere is there evidence that NIH is being innovative in their response to the decades old need to accelerate biomedical research and increase funding in order to solve ME!!!
NIH has repeatedly failed and continues to fail to aggressively maximize all of the tools at their disposal.
In May 2018, Dr. Collins (head of NIH) received a letter signed by over 7000 people detailing a plan of action that could easily accelerate the pace of ME research. If you haven’t read it, I urge you to do so.
As Ben mentioned earlier, the letter was developed as a framework of actions that NIH (and HHS agencies) can take now, concurrently to move things forward in a scientifically sound manner.
The letter included suggestions for multiple simultaneous efforts such as:
- Issuing RFAs
- Ensuring development of the much needed consensus derived research case definition
- Funding program announcements
- Accelerating the pace of the intramural study
- Issuing administrative supplements to provide additional support for the current collaborative research centers and the data management coordinating center
- Funding additional collaborative research centers
- Establishing a cross-agency strategic research plan
Thus far NIH has not responded to the letter.
And yet ALL of the things detailed in the letter are eminently doable using mechanisms currently available to NIH (and HHS agencies).
So the question is – what does it take for NIH to promptly and fully engage with us in the proposed plan of action to expeditiously move things forward for us?
simultaneous efforts to improve outcomes as soon as possible! We need them NOW!
– Denise Lopez-Majano
#MEAction serves as a non-voting liaison on CFSAC. If you are interested in getting involved with #MEAction’s work at CFSAC, please fill out the volunteer form, or email firstname.lastname@example.org.